Let me begin by saying that I don't find the task of
writing this column particularly easy - discussing
the description and findings of a longtime PWC/ME
who died recently. It seems like
every time you look closely at someone with this
disease, you see immense suffering. As I have noted
in previous columns that I have written, there
unfortunately appears to be no limit as to
the human toll that this disease is capable of
exacting on patients.

When I first began to read the autopsy report and
death certificate for this PWC/ME, something
initially caught my eye. On a line that read "Enter
other significant conditions contributing to
death..." were the words "Chronic Fatigue Syndrome
and Fibromyalgia" written by the medical examiner.
Perhaps this would help change the minds of people
who don't
believe in the seriousness of this disease - the
doubters. As to this PWC/ME's determined cause of
death: Seizure disorder, rhabdomyolysis, acute renal
failure and shock.

Our patient is a longtime PWC/ME who had been seen
by a battery of physicians. Like this patient, many
have been on various pain medications that are quite
common for those with this disease. Upon arrival at
the hospital, they developed multisystem organ
failure secondary to severe rhabdomyolysis. Acute
renal failure and subsequent shock led to their
death.

Other observations that were made
during the autopsy examination:

* Externally:Edema of the lower
extremities was found.

* Internally:

Pulmonary - The right lung weight was
approximately twice that of the left lung. The right
lung was found to have many adhesions along with
fluid in that lung.

Gastrointestinal - The liver had marked
congestion. There was evidence of ischemic
(insufficient blood supply) bowel. (Intestinal
ischemia is the death of part of the intestine after
its blood supply is cut off. The hallmark of
intestinal ischemia is abdominal pain. Vomiting,
diarrhea, and in some cases, fever, are also seen.)

Genitourinary - The right kidney appeared
shock-like and pale.

Head and Central Nervous System - There was a
cystic defect in the right occipital lobe.
Furthermore, the white matter surrounding this
defect appears puckered and has a brownish
discoloration.

* Microscopic description:

Lung - There were small emboli scattered
throughout the arteries. The alveolar spaces were
filled with inflammatory cells. There was marked
congestion and there were scattered fibrotic nodules
within the lymph nodes. One nodule was calcified.

Liver - There was marked congestion of the
sinusoids.

Spleen - There was marked congestion of the
red pulp.

Kidney - There was mild inflammation.

Bowel - Ischemic

Bladder - Hyperplastic epithelium

Thyroid - There were varied sized colloid
filled follicles. There were scattered dystrophic
calcifications and calcifications of
small arterial walls.

Head - Cystic region of right occiput showed
areas of degeneration with multiple blue lamellar
bodies. There were degenerated astrocytes. These
findings are non-specific and can be seen in a
variety of degenerative disease processes.

The medical examiner's opinion was that this patient
died as a result of an underlying undiagnosed
seizure disorder with a subsequent fall and
rhabdomyolysis that led to multisystem organ failure
and ultimately to their death. The examiner's
pathologic diagnoses included (1) epilepsy with (A)
rhabdomyolysis secondary to seizure, (B) acute renal
failure, (C) congested liver as well as (2) right
pleural effusion with adhesions and pulmonary edema.

Let me discuss a few of the major findings from this
medical report since it may help to assist in our
understanding of what happened to this PWC/ME:

Epilepsy has been recognized for over two-thousand
years. It is derived from the Greek word "epilepsia"
meaning "to come upon, to be grabbed hold of or
thrown down, to attack, to
seize hold of." In 1861, Hughlings Jackson first
developed the theory that seizures were caused by
excessive discharge of the gray matter of the brain.
Today, epilepsy is viewed as a symptom of disturbed
electrical activity in the brain caused by a wide
variety of disorders.

Epilepsy is a general name given to the wide range
of symptoms that reflect the many functions of the
brain in a pathologically disturbed manner. It is a
collection of many different types of seizures that
vary widely in severity, appearance, cause,
consequence and management. Epilepsy implies a
periodic recurrence of seizures with or without
convulsions. Seizures that are prolonged or
repetitive can be life threatening. Seizures occur
because small numbers of neurons discharge
abnormally. Anything that disrupts the normal
homeostasis of the neuron and disturbs its stability
may trigger abnormal activity and seizures.

Many factors have been shown to precipitate seizures
in susceptible individuals. Hyperventilation may
precipitate absence seizures. Sleep, sleep
deprivation, sensory stimuli
and emotional stress may initiate seizures. However,
the most clearly established risk factors for
epilepsy are severe head trauma, central nervous
system infections and stroke. Certainly,
anyone who has personally known many PWC/ME's will
tell you stories of patients who have had seizures.
This is not uncommon with this disease and may be
indicative of metabolic or physical imbalances that
exist in the brain.

Rhabdomyolysis is the breakdown of muscle fibers
resulting in the release of muscle fiber contents
into the circulation. Some of these are toxic to the
kidney and frequently result in kidney damage.

Myoglobin is an oxygen-binding protein pigment found
in the skeletal muscle. When the skeletal muscle is
damaged, the myoglobin is released into the
bloodstream. It is filtered out of
the bloodstream by the kidneys. Myoglobin may
occlude the structures of the kidney causing damage
that may lead to kidney failure. In addition,
myoglobin breaks down into potentially
toxic compounds that also cause kidney failure as
well. This destructive process may ultimately lead
to shock because of alterations in circulating fluid
volume and reductions in blood flow to the kidneys.
The general symptoms of rhabdomyolysis include
abnormal urine color, muscle tenderness or weakness
of the affected muscles, muscle stiffness or aching
as well as generalized weakness. Additional symptoms
include unintentional weight gain, seizures, joint
pain and fatigue.

Acute kidney failure is defined as the sudden loss
of the ability of the kidneys to excrete wastes,
concentrate urine and conserve electrolytes. The
general symptoms associated with kidney failure
include urination that can be excessive at night,
swelling of the ankle, feet or leg, generalized
swelling and fluid retention, decrease in sensation
especially in the hands or feet, changes in mental
status or mood, hand tremors, flank pain, fatigue,
ear noise/buzzing, breath odor and high blood
pressure.

Shock is a life-threatening condition that occurs
when the body is not getting enough blood flow. This
can damage multiple organs. Shock requires immediate
medical treatment and
can get worse very rapidly. Thus shock can be caused
by any condition that reduces blood flow. Symptoms
associated with shock are anxiety or agitation,
confusion, low or no urine output, bluish lips and
fingernails, dizziness or light-headedness, profuse
sweating - moist skin, shallow breathing, chest pain
and unconsciousness.

In summary, even though this PWC/ME had an undiagnosed seizure
disorder, they
died of rhabdomyolysis (muscle breakdown) which led to acute renal
failure and subsequent shock.

This column is dedicated to a special PWC/ME who has given a generous
gift in
death - a gift of discovery and knowledge. The National CFIDS Foundation
sends our sincere condolences to the family, who through their courage
and unending love, felt compelled to assist in our scientific
understanding of this disease process by allowing their loved one to
undergo an autopsy. It is with our deepest gratitude that we continue
our journey for truth and answers to this devastating disease.